Life in the New Republic

Star Wars: A New Hope was released when I was 19 years old & I've been hooked on the series ever since. What I have found in the intervening years is that the Jedi philosophies of Star Wars have become a useful analogy for my life, particularly since my son was diagnosed with Asperger's Syndrome- hence "Life in the New Republic".

Monday, January 30, 2006

More on meds...

Thanks in part to Zilari's comment to my last post (which I entirely agree with), I realise that I need to explain a bit more about our decision to use medications with B- how it all came about, some personal history on the subject, & our philosophy concerning the use of medications with our child.

B was "officially" diagnosed by a pediatric neurologist as having Asperger's Syndrome when he was 6 years old. This diagnosis came one year after he was first evaluated for severe developmental delays, & we sought the neurological evaluation because his psychologist & his visual/perceptual therapist had mentioned that B seemed to them to be on the spectrum. At his neurological examination, B was given a few possible "diagnoses", including Tourettes, non-verbal learning disability, & something not yet in the DSM, called "multisystem developmental disorder" (which refers to autism-like symptoms which develop later into psychiatric conditions). The neurologist stated clearly, however, that B's educationally handicapping condition was autism & should be his primary diagnosis for CSE purposes. We have since started using classroom & home strategies used for kids with non-verbal learning disabilities with B, & the Tourette's diagnosis was officially put into place last summer after his long-time perseverative behaviours coalesced into classic Tourettes tic-behaviour. At the time, my brain just sort of skimmed-over the "multisystem developmental disorder" part- more on that later...

At this time we were offerred the option of putting B on medication to help with the behavioural part of the Aspergers symptoms. I don't even remember what the drugs were, I was so opposed to the idea. I explained that we tried to use herbal medications as much as possible with B, & the neurologist was able find us information on alternative medications. The best information seemed to be on the use of vitamin C to help with tantrums/meltdowns, so we began a mini-trial, using it for a few weeks & then stopping it. We found that we did notice positive behavioural changes on the vitamin C (1000 mg. daily- which meant we had to be careful not to give him anything else fortified with Vitamin C lest we overdose him...). We continued this for 2 years, when the OCD took over everything (including behavioural charting) & threw them out the window.

The reason I have such strong feelings against medications that cause brain chemistry/behavioural changes begins with my childhood. My father, who was also my abuser (see "History pt. 1" in the January archives), was bipolar (manic-depressive) & had been since before I was born. He was a very intelligent person, but his mental illness & the way it was (& wasn't) treated in the 1950's- 1970's made my whole family's lives hellish. I remember vividly the handfull of colourful pills daddy took every day. I was fascinated by them, but never knew what they were for until I was an adult. When I was a teenager, in the early 70's, my father found a new psychiatrist who admitted him to the psych unit of a local hospital to "dry-out" so that he could start newer medicine for bipolar disease. This was the first time I knew that my father was mentally ill, & although this did signal a positive change in my father's ability to cope with life in general, it was too late for me to have any trust in him. My experiences with his out-of-control behaviours are strongly intertwined with the colourful little pills he took, & are the basis of my aversion to psychiatric meds. I went through my own recovery from the incest with no medical intervention because I was afraid that if I took medicine then I would be like him... It wasn't until I experienced severe postpartum depression (made worse by having developed thyroid disease as a result of my pregnancy) that I agreed to try antidepressants. Once B had weaned himself, I had tried every herbal remedy I could find & nothing was helping. B was around 15 months old, a high-needs child, & I was not coping & knew it. I contacted my therapist & she strongly urged prozac. I agreed to try it... & the evening I was to begin taking it I just freaked-out. I was terrified that I was becoming my father by taking that pill. C called my therapist & she talked me down & made room for me the next day in her schedule. I took the pill. I slowly came to terms with it... but I didn't like the side-effects, nor the feeling of observing the world through a plate-glass window. The side-effects caused me to switch to zoloft, which I tolerated better. I finally began to engage in life again & take on projects, although the sense of being somewhat removed from life made me sad (but not depressed- !). Nine months into my anti-depressant life, in the middle of participating in the planning of a continent-wide church conference to be held in our town that summer, I began experiencing strange twitches & full-body spasms. C felt me go into spasm one night, in bed, & realised that I was experiencing serotonin overdose symptoms. It was his turn to freak (a bit- he's calmer than I am :). He had me contact my doctor & the news was that I had to stop the antidepressants... I panicked because I had taken on a big responsibility & was not sure I could go through with it without them. C assured me that he'd fill the gaps & do the things, like making phone calls (the first thing that goes when I am depressed), that I couldn't. I also researched the herbal solutions more in-depth & decided to try St. John's Wort capsules as soon as the zoloft was out of my system. Thanks to C's support, I got through the transition, and the conference, & found that the St. John's Wort capsules did help with the depression. The added bonus was that I wasn't living behind the plate glass window any more.

Fast-forward to nearly two years ago ago... Right before his 8th birthday, B began having trouble making simple decisions, worrying excessively about outcomes, melting down when faced with too many choices. With Dr. M's (B's psychologist) help we tried different strategies to help him cope, but things just kept getting worse. A classmate that B had had a falling-out with the previous autumn became the focus of alot of B's anxiety at school. He couldn't sit where he could see this kid, sometimes couldn't be in the same room. B's anxiety started to interefere with his ability to do his school work, no matter how creative his teacher was in trying to keep him engaged. There was a new adult in the room, a personal aid for another classmate, who seemed to intimidate B, too. B was losing control over impulsive behaviours, too, & would do bizarre things like cut the cords to the computer mice at school. We were completely flummoxed by this. Then one day I got a call from the former special ed. co-ordinator at school: B had tried to "zap" himself by putting a paper clip in a wall socket. B wasn't hurt, but the teacher was in tears along with me, on the phone. When I got to school & sat down with the teacher & B, he said that he didn't want to exist... I don't think I'd ever been so frightened as a parent. We got in to see Dr. M, who suggested it was time to get B in to see a psychiatrist, since this seemed beyond our attempts to handle with behavioural therapy. With Dr. M's help, we were able to get B in to see a very well-respected child psychiatrist (with very efficient trolls guarding his doors :). After evaluating B, Dr. E thought prozac might help. Since this was the most benign drug on the list of possibilities, we agreed. B's behaviours were getting more bizarre & he was clearly not enjoying any part of his life. He tried to tolerate school, but some days had to call me to come & get him because he was so overwhelmed by anxiety. He stopped progressing in his school work & it shows very clearly in his 2nd grade portfolio- you can pretty much tell when the OCD began by looking at his work. He started using paper clips to poke himself, sometimes drwaing blood. He also began to have trouble with people touching him, or touching things others had touched. He couldn't sit in chairs at school, use pencils anyone else had touched, & would sometimes scream & run out of the room if someone bumped into him. I bless the kindness & creativity of his teacher & the other adults at school- B's classmates never ostracised him for these behaviours & he was never made to feel any worse about them (than the feelings that caused them in the first place...). All this while we were slowly increasing B's dose of prozac to the weight-predicted optimum dose. Unfortunately, when we finally got there, the prozac caused him to go manic/psychotic. The anxiety became so acute that he was hitting himself & needed constant watching. I remember trying to restrain him from hurting himself & realising that we had to get a handle on this problem before he got too big for me to sit on! Dr. E suggested trying seroquel, a mood stabiliser, & withdrawing B from the prozac. Although we had reservations about the side-effects of the seroquel, we needed to do something, so we did both simultaneously & B's behaviours started to calm somewhat. He was still over-stimulated out of the house & couldn't walk down the street without twirling every time a car went by. There were certain stores that he couldn't go into, & luckily he was beginning to understand what was going on. When I asked him why he got so agitated in certain places he could articulate quite clearly what was bothering him, which made it easier to know where I could & couldn't take him. During this summer, B developed a morbid fear of spiders, which caused us to cancel one of our planned vacations, to our church family camp, since most of the buildings there are infested with spiders. B developed an aversion to his thumbnails & wouldn't use his thumbs to do anything. I found that taping them with surgical tape helped some, but he would get hysterical when the tape fell off. B also got to the point where I was the only person who could touch him. Dad could tap B's foot with his own, but that was it. No hugs for or from Grammie or anyone else...

Slowly, through the summer, B started to respond to the seroquel. By August dad could touch him. B was able to stay with a sitter- only Paula's son C, though, but we started getting out again. The worst part of the seroquel was the effect it had on B's body. B gained 15 lbs. in just the first few weeks & developed breasts, which he still has. I looked for clothes B was comfortable in & that gave him good coverage for his new girth, since we didn't want him being teased on top of everything else. Before the school year started, C & I researched the OCD & arrived at our pre-3rd-grade meeting with B's new teachers armed with strategies for coping in the classroom. The consultant teacher assigned to B's classroom bonded quickly with him, & his classroom teacher, Jen, had a good mix of flexibility & boundaries which fit B's needs very well. When it became clear that B's fine-motor skills would interfere with his ability to write his work, they brought one of the media centre computers into the classroom for B to use. To help B's self-esteem during this crisis, C & I had given B our old Mac Performa computer as his very own, so he was "Mr. Computer" & happy to show anyone who needed it how computers worked :)

Although B's behaviours have never since regained the "normal-for-him-ness" of pre-OCD, with the medication he has been able to get his life back on track. He has the normal 9-year-old fascination with farts & burps & other gross things :) His reading has progressed from 2nd-grade level to 7th grade level in just 2 years (yikes!) & he's at grade level in his other subjects, & enjoying learning. B knows that the seroquel is responsible for his weight gain & need for occasional blood tests (it predisposes him for diabetes), but also understands that we feel it's essential for his functioning. Because of the seroquel we've become much more aware for the need to eat healthy foods & have worked to change our eating habits accordingly, with the result that both C & I have lost weight- yeah!! In all, B has a zest for life & enjoys many activites.The only times that this changes is when he's "outgrown" his meds & needs to have the seroquel dosage increased.

I have learned a great deal in the past 2 years. I have learned not to mind having a child who's behaviours make him stand out in a crowd. I have learned to be grateful that I dealt with my main hang-ups about psychiatric medications before my kid needed them. I know that B needing anti-depressants makes him no more like my abusive father than I was when I needed them. The "multisystem developmental disorder" that I mentioned earlier does make me wonder if what we're seeing is early manifestations of the psychiatric problems associated with this, but whatever the label put on the OCD/anxiety- psychatirc or behavioural- what really matters is how well we help B deal with it. I have developed a strong sense of B as a whole person. Even though I wish he didn't need medication to function, I wouldn't change any part of him lest it change the person he is, deep down. I love that person very much & B knows that I wouldn't change him for anything. I just wish I could come to terms with the changes seroquel has made in his body, It's such an obvious difference, a constant reminder that we have made this choice for him...

Writing today, remembering what it was like when B's OCD changed our lives, has helped to remind me of just why we made this choice, though. I have seen him grow so much just in the past couple of months, taking responsibility for finding tools to help himself overcome the OCD & anxiety. As scary as days like last Friday are, I can't help but feel hopeful. At essence B is a capable, bright, & creative person. The seroquel does not diminish this. It gives him the opportunity to be who he really is, without the crippling anxiety, & I just have to remember this when I struggle with my feelings about the side-effects. Certainly my ambivalence about it does not help B, any more than unquestioning, blind faith in what medicine can do would. I guess I'll have to develop "wide-open-eyes faith" in this scary-helpful stuff. And deeply enjoy the times when my kid can be the whole, loving, growing person that he is...

Saturday, January 28, 2006

Life at the speed of B...

As I had hoped, B's psychologist, Dr. M, was pleased with the "toolkit" we are helping B create to deal with the OCD. We met with him yesterday morning & he & B seemed to have a good session. Then the 2 of us went to our favourite Japanese restaurant for lunch, which was lovely. All seemed mellow until B had been playing on his own for a bit with his newest lego, a spybot with programmable missions. B adores this sort of thing, but has the habit of assuming that he should know every little detail of how it works intuitively, so rarely spends much time with tutorials or FAQ's... with predictable (to any parent) results. The frustration level often rises until he's screaming with fury, ready to throw it all in the trash & cursing the day it arrived in his life. Usually we can sit with him, & in the guise of him teaching us how the thing works, he'll learn what he needs to work it right... but yesterday was different. After the angry explosion from his room, I found him on the floor in tears & could not move him. He was distraught. I sat & listened, questioned, repeated back to him what he was saying, all in an attempt to figure out what went wrong... the mission was too difficult & he'd never get it right... well, what was the mission in the first place?... and so on. As far as I could tell, he was putting the spybot through a maze of his own making & making it too hard for himself to succeed. I was rather flummoxed by this & tried to suggest that he make it a bit easier at first, then slowly harder, but he said he didn't know how to do this. Bit by bit, I was figuring out that the mission wasn't the problem. I managed to get him to show me the programme, but there was so much that he didn't understand- I asked him if he couldn't just use the less-complicated missions until he learned more, but that was "boring". **sigh** None of my established methods for helping B were working. I couldn't micro-manage it, macro-manage it, or learn how to do it myself. I wondered out loud if maybe he should take a break for a snack & then come back to it, which resulted in another descent to the floor in tears, This time I lost patience & hauled him into my lap, none too gently, rather than joining him on the floor. I don't know how long we sat, him crying inconsolably & me just hugging- it felt like at least an hour. My legs fell asleep & so did his. I was finally able to distract him with humour (couldn't feel my legs & told him so, then did an imitation of B jumping around to get the circulation back- I always think he's doing the "potty dance" when he does this, which cracks him up). Then he agreed to sleep the computer & come down for a snack. He kept hugging me & telling me I was the best mom- I think he was relieved not to be lost in distress any more. The depth of his sadness scared me too...

We got by until dad came home, then Grammie came to dinner as she usually does on Friday nights. He usually finishes eating before we grownups do, & gets to play on the computer or chat with us until dessert, but he was distractable at the table & couldn't sit very long. He had no interest in the computer, & requested that he be allowed to watch a "Jeeves & Wooster" episode, so we said ok. He was able to stop for dessert, but then had to go right back up to finish. Clearly he needed distraction... Grammie & C joined him, instead of playing a game as we usually do after dinner. B was ok until Grammie went home, but got "stuck" after getting jammies on & couldn't/wouldn't use his fluoride rinse & finish getting ready for bed. We tried to get an extra seroquel tablet into him (which the psychiatrist has ok'ed for emergencies) but he refused, which really upset me. He refused reading time too, just sat rocking on his bed in deep distress. I was at my wit's end, wondering if this was the night we'd have to take him to the emergency room. C decided to get him back in front of the tv & succeeded by enticing him with one last look at the Pokeman tape from the library that was due back today, & after watching a couple episodes, was able to get him into bed without a fuss. C came down & said B requested I go up for another kiss goodnight. When I went up, he apologised for being unco-operative & asked for a "quick minute". As I lay there beside him, I explained that I got upset because I was afraid. He said he understood. I left after a bit & he fell asleep...

C said that he had also been ready to take B in to the emergency room for something to calm him down, if he hadn't responded to the video. I told C that I believed B had outgrown his seroquel dose again &, after discussing it, he agreed. This is the third time in 1 1/2 years that B has outgrown his meds & it seems like we never learn... he always freaks out in some way, then we consult with the doctor, & up goes the dose. I hate this yo-yo-ing, but how else can we keep him on the minimum dose he needs to function? I have such deep ambivalence about B being on the seroquel in the first place. It changed him terribly- turned my skinny kid into a blimp (like he needs more social issues?) & puts him at risk for diabetes. On the other hand, without it he literally could not function. He would not be the sweet, loving boy he truly is. This anxiety/depression turns him into a brooding, snarling monster & the seroquel is really the only thing that helps him. I've had to get over so much in the past 2 years- get over the how the OCD behaviours look in public, the tics, the looks on peoples' faces when they see my cute kid jerk or twirl. I've done that, ok, so why can't I just get over the seroquel? He needs it! I can't bear the person he is when he doesn't have enough in his system- why do I feel like I'm feeding my baby poison?

Today started out rough, with B waking me up at 6:45 am because he was obsessively playing with & then dropping things while watching a dvd... Dad was at work (he goes in at 6:00 am on Saturdays just to do paperwork, then comes home around 8:00 am). B & I were pretty fed-up with each other by the time dad got home, & I was exhausted from the day before & getting up too early. Fortunately, with 2 of us to keep track of him, we got through the day without any more meltdowns to despair. We increased the dinnertime dose of seroquel, too. Since we're seeing B's psychiatrist this week, plus we know that he's had a significant weight-gain since before the holidays (& dad the doctor knows how much B can have based on his weight), plus it's the same pattern we've dealt with in the past, so we're quite sure that she'll be fine with it. I feel confident that life will be back to "normal" soon. But I feel so afraid when we have these "blips" in the "normal" routine... what if he develops diabetes & we have to take him off of the seroquel? How long can he safely take it? Will he ever be able to get his real body back? How can I continue to find clothes that fit him properly & allow him to feel good about himself? What will I do when he's too big to restrain/hold in my lap? How do I get him successfully to adulthood & beyond when his brain chemistry is so wonky? I am grateful for the long periods of relative peace- when we can help him find the tools he needs to be the best he can be & feel hopeful about his future. We've found the resources to cope so far... & we know that if we have to take him to the hospital, we will, & we'll survive it.

Thursday, January 26, 2006

B's "Toolkit"

Thanks to the energy input required to cope with B, I sometimes refer to him as "twins" (think Fred & George Weasley of Harry Potter fame- which would give B no end of delight, especially as they share birthdays :). It occurred to me today that "twins" is a good analogy for B & his OCD/Tourettes, as it sometimes feels as though B's OCD "thoughts" are another, very pushy member of the family. B developed the OCD symptoms right before his eighth birthday, nearly 2 years ago, and added the Tourettes diagnosis to his resume this past summer when his long-time perseverative behaviours transformed into full-fledged tics. At the moment, this combo requires a great deal of intervention & account for most of his difficulties at school & at home. Most of the OCD symptoms take the form of "thoughts" that are often triggered by specific things in his environment (for example, his left hand) that cause severe anxiety & limit what he can touch or do, or where he can go. Sometimes the anxiety revs him up into such a state that it's extremely difficult to calm him- we've nearly taken him to the hospital 3 times in the past year & a half but were finally able to find some way to help him calm down & go to sleep (this extreme anxiety always hits him at bedtime). When B is in a state of anxiety the Tourette's kicks-in & the tics sometimes look like he's having a seizure. B is on a combination of medications (seroquel, zoloft, & buspirin) which allow him to function well enough to go to school, but take constant fine-tuning as he grows, gains weight, & as his brain/body chemistry changes. The seroquel, which is a mood stabiliser & the main drug that helps B, predisposes him to diabetes, so he needs semi-annual fasting blood tests. It also has caused him to go from 50th percentile for weight to over 95th, puffing him up like the Michelin man. The zoloft, which is the drug that helps with the OCD anxiety, has been reported in the medical literature to cause an increase in suicidal thoughts in children, so we watch him carefully. The buspirin was recommended by B's psychiatrist when his anxiety started to get out of hand again last fall, & we were reluctant to switch B to clonipin (which has even more severe side effects than the seroquel). The busepirin seems to have helped some, but to be honest, I can't tell if it was really due to the anxiety letting-up on it's own or our adapting & coping better with B's anxiety, or a combination of the 2...In addition to monthly visits to Dr. B, the psychiatrist, B also sees his psychologist Dr. M at least monthly, & then C & I see him as often as needed, to help us find coping strategis so we can stay sane. Dr. M has been on the team since B was in kindergarten & is a wonderfully skilled, personable, & resourceful person. He has most recently been working with all of us on the behavioural/cognitive methods that can help B learn to control & eventually overcome the OCD.

When B went back to school after New Years he found that some of the OCD thought triggers at school that he'd overcome before the break were back in full force. He started tic-ing in the car on the way to school one day, in anticipation of these triggers, so I tried a new approach... I suggested that he think about learning a "special sense" that would help him tell the difference between OCD thoughts & his "real" thoughts. We discussed ways he could do this & he suggested asking someone he trusted to help him tell the difference. We compared some of his OCD thoughts, like the thought that makes him think the batteries in his talking Pikachu are going to catch fire, to reality, trying to figure out the chance that something like that could happen, taking toy safety standards into account, etc. He concluded that this fear was definitely an OCD thought & filed it for future reference. I also shared with him that I have had some difficulty with OCD over the years (on a sub-clinical level, I believe it to be a coping mechanism I developed for dealing with my childhood abuse). I told him that sometimes I have a thought when I leave the house that the door isn't locked & I have to go back & check. To stop this, I started wiggling the doorknob every time I leave the house to see if it's locked, so that if I get the thought, I can immediately answer it without going back to check. B & I shared some of these new strategies with Cherie, his consultant teacher, so that she could follow-through with them at school. Since then, B has regularly checked possible OCD thoughts with us &, so far, accepts when we confirm that they are OCD, so that he can move on & not get stuck with the thought. Today, after another difficult arrival at school, I introduced the idea of adding a new skill to his "toolkit" of coping strategies- that of developing laser-intensity (he loves lasers :) concentration so that he can distract himself from disturbing thoughts. He had taken refuge in the special ed. resource room & sat slumped in a chair, unable to even buckle his shoes, & was not terribly receptive to this idea. I swallowed my frustration & calmly reminded him that one of the advantages of having Aspergers was his ability to concentrate, & told him that I really though he could learn to do this. Cherie came in while I was talking & chimed in, mentioning that he barely tics when he's concentrating hard on his schoolwork. He remained non-committal, but was willing to be jollied into putting his shoes on & was in a pretty good state of mind by the time I left. When I came to pick him up at the end of the day, Cherie said that he'd had a good day. In the car on the way home from school B casually mentioned that he & Cherie had gotten online & researched Tourette's Syndrome. He said he wasn't sure if any of the information would be useful for his "toolkit", but he had learned that one of the characteristics of people with Tourette's is a good sense of humour, which cheered him up. Bless Cherie! It's such a wonderful thing to have the other significant adults in B's life echoing the positive messages that we're trying to get him to hear, plus empowering him to look for information he can use. B & I see Dr. M, his psychologist, tomorrow & I am looking forward to giving him the progress report that B is actively looking for strategies to help himself with the OCD. I know we have a long haul ahead of us, & sometimes it feels like we're barely keeping ahead of B's anxiety, but progress feels good, no matter what happens tomorrow!

Wednesday, January 25, 2006

A trip to Tuva, via the Antarctic & Japan (an uncommonly common day)

Yesterday began with B booting up his new-to-him pc (I will relate this story later) at 6:45 am to play a game until wake-up time, & us both discovering to our dismay that the headphones weren't over-riding the speakers (his room is right next to ours...). After mucking about with the equipment, I went back to bed for 3 minutes (seems loony, I know, but it sometimes puts me in a better frame of mind) & then got up at my real wake-up time to get out his clothes for school & start the day. I was rummaging around in my closet for my own clothes when the lights went out. At just past 7:00 am, it was pitch black in the house... I stood there & waited for the power to click back on... & waited... Then it occurred to me that I hadn't heard peep from B's room, so called to him to see if he was ok. He was! His only concern was that his computer hadn't been shut-down properly. I found the emergency flashlight, which I used to find B's misplaced (he thought) flashlight, & then checked the neighbours on either side to see if they had lights, which they didn't. Ok, it wasn't just us... We got dressed, each in our flashlit rooms, then headed down for breakfast. Ok, no toast, no microwave to reheat anything, luckily B usually has cherry yoghurt for breakfast. We sped in & out of the dead, dark fridge to get milk & yoghurt (but did I notice his lunch...?). I managed to find enough still-hot water in my Japanese electric water-boiler to manage a pot of tea. Then I realised that it was Tuesday, which is our friend Darryl's day to come & clean the house for us. When he arrived at 7:45 am, he decided to do what he could by daylight & maybe the power would come back on while he was there. B & I went to the car to drive to school & I was struck by the light in the car coming on when I opened the door (less than an hour without electricity & I already missed the little things...).

On the way to school there was one intersection with a dead traffic light, & it was clear that the surrounding businesses (including a small medical centre) were without electricity. Although B was worried, school was fine, power-wise. However, we soon discovered that he had no lunch (it was still in the dark fridge), so I told B I'd bring it to him mid-morning. He went to his locker & I was in the special ed. resource room telling the teachers (including a neighbour) all about our morning excitement when B came tearing into the room, tic-ing like mad. Cherie sat him down & gently asked about the triggers (most of B's tics are triggered by OCD thoughts) & talked him into a calmer state. The three of us talked about strategies for making the triggers less intense & also the time, in the future, when they wouldn't trigger him at all (this seems to give him a sense of perspective on it & help with the frustration). When B was calm enough, Cherie asked him to show me the story he was writing on his Alphasmart, an hommage to Daniel Pinkwater, & it was a riot. Soon, B was smiling & chatting with Cherie as he began his morning work- what a blessing! When B is in the middle of a trauma I find it incredibly uncomfortable to just leave him, even if I can't really do anything for him. I was so grateful to be able to leave him in a happy state of mind. I headed downstairs to Paula's room where she was setting out a long piece of paper from a big roll for the semi-annual marker check. The kids usually love this- make a squiggle on the paper to see if the marker still had ink, if so- it went in the basket, if not- it got chucked into the wastebasket. The usual crowd of free-time drawers/colourers was in another room engaged with another project, so Paula & I did it. It was so relaxing to make squiggles on paper & chat. I asked for the paper to take home so I can make origami paper out of it.

On the way home I noticed that the traffic light & surrounding businesses were still dark... it did not bode well. At home, I found my neighbours manually opening their garage doors (electric opener) & they told me that the power company planned to have the electricity back on by 10:30 am. We had a nice, if chilly, backyard visit & I got in the house just as Daryl was finishing all but the vacuuming. I was amazed by how cold the floors were & scurried for my slippers. Daryl offered to come back at the end of his work day to finish the job & I finally agreed when he said he wouldn't feel right not doing it (we are so lucky to have him as a housecleaner & friend!). After he left I packed B's lunch & headed back to school (this time I noticed not only the light in the car, but the heat!). I poked my head into the classroom door & waved at B's teacher to tell her his lunch had arrived, then headed off to Starbucks for an emergency venti decaf latte & a cinnamon doughnut. I was home by 10:00 & when I went to unbutton my coat, it was so cold I had to leave it on. I held the latte in my hands to warm them. After wandering around the house considering all of the things I usually do when I get home from dropping B off at school: checking the email, checking the HP forums that I help moderate, checking the blog, then headed up to my sewing/fibre/craft room to cut fabric- something that did not need electricity. I had purchased the most recent book by my favourite fibre artist, Kumiko Sudo, called Kokoro no Te, before the holidays, but had barely looked through it. I had showed it to our Japanese teacher & she became very nostolgic when she saw the pattern for otedama, which are little beanbags used for juggling balls or paperweights. Tomoko told me that this is one of the first sewing projects that a little girl in Japan does with her mother, so I decided that I wanted to make some as my first foray into the new book. I collect scraps of kimono fabrics to use for these projects, & I was happily (fully coated & scarved against the cold) cutting bright fabrics when I heard a hummmm... & realised that the electricity was back on (10:20 am- not bad!). I finished what I was cutting & then scurried around the house resetting clocks. I was soon able to shed the coat & scarf & got down to the business of my interrupted life- computer life, mostly. By the time I was done & had eaten lunch, it was time to pick B up at school.

It was swimming day for B's class, & they get back to school right before dismissal, so things are sometimes chaotic. I got the daily report from Cherie, which was good, & collected B's pieces parts to go home. We were driving in the car when we discovered that he didn't have his homework. B said he was disappointed, but relieved (he has come to consider homework a necessary evil, but does not like it) & I said that the disappointment was a good sign- that he was internalising the responsibility- but that he could do it tomorrow at school because we were not going back! On the drive home I noticed that the dead-traffic light intersection was still dead, & dotted with electric company trucks. The lack of homework made things feel out of whack at home, though it was nice to be greeted by a vacuuming Daryl. B grabbed a granola bar & headed off to the new computer. I wasn't quite sure what to do with myself. Over the past couple of weeks B has regressed a bit independance-wise. He has been needing me to be on the same floor as he is, & sometimes we have to be in the same room, which leaves tv & playing games together as the main post-homework activities. Dinner-making has been very difficult too, since B wants my attention while I need to cook & we have been having some difficult pre-dinner times (which is never the best time of day for either of us anyway). The new computer arrived last Sunday & seemed to work a behavioural miracle, as B has been perfectly happy to be playing in his room for as much time as he could get the past couple of days... but he occasionally needs frustration/OCD thought intervention (B starts moaning or screaming & needs someone to talk him past the the OCD moment) so I decided it would not be a good idea to get too involved in any projects. A perfect afternoon for otedama. I put the fabric in a little sewing box with silk thread & sewing needles, found some beans, & sat at the kitchen table sewing. Daryl finished the vacuuming & I gave him an origami box full of Japanese sweets as a thank-you, since I really couldn't let him leave without showing how much I appreciated his help. When I intermittently heard B yelling I went upstairs & intervened, then came back down & stitched. I thought about the little girls in Japan, learning to sew by making these otedama. It's a tricky pattern that involves sewing the fabric around right-angles of other fabric (not like western-style quilting at all) & I wondered if they became discouraged or if it was so interesting that they'd get hooked on sewing- another thing to ask Tomoko... Later, B came bopping downstairs & asked to go online to play some games (only the downstairs computers are internet-connected). I said sure, & soon heard a whoop from him- the long-awaited game at the Lego site was finally online! The phone rang at 5:30 & it was C saying that we should eat dinner without him because he was going to stay at work late & do his paperwork there, rather than bring it home, because of the concert...

Yikes!! I had forgotten about the concert. We rarely do anything on a weeknight other than Wednesday (C's day off). After a full day of coping on my own with B, home, etc, going out at night feels like starting the day all over again. But C had read a notice about a group of throat-singers from Tuva (south of Mongolia but for many years part of the Soviet Union) coming to town & had gotten tickets. We had asked Paula to come to the concert & her son to kid-sit for B. After such a day, my first reaction to the concert reminder was "arrgh!" but I really was intrigued by the idea of hearing throat-singing live (I'd heard recordings). The venue was the well-respected music conservatory in our town & I like the theatre there very much. I was awakened from my shifting of mental gears by meltdown sounds from the downstairs computer area... I should mention here that we have Macintosh computers (except for B's new pc) & that the Mac/Lego interface is shaky at best. Some of the Lego site games work fine, some crash intermittently, some don't work at all. I was mentally kicking myself for not preparing B better for the possibility that the game wouldn't work as I went to pick up the pieces of my kid. He was in tears, angry & frustrated & sad. The game had taken forever to load & now it was frozen. He was furious that the Lego people don't make their products to interface with with Macs. I just hugged him & agreed with everything he said, because it's true, dammit! I was proud of myself for not getting too sucked into B's grief & anger, & for only raising my voice once, when it was clear that he was not hearing me. After validating his feelings for a while, I quit the game & got him into the kitchen for some dinner, which really helped. It was such a relief- in the back of my head was concern for Paula's son (who's been sitting for B for nearly 4 years & has Aspergers himself) trying to cope with a post-meltdown B, plus the possibility that he'd be in such rough shape that we couldn't go to the concert... but B was in a much better place after all the hugging & pizza in his belly. He greeted dad cheerfully when he got home with nary a mention of the Lego site disaster (I filled C in privately). When Paula & her son (also a "C") arrived, B was ready to show him the new computer & what he could do.

There was quite a crush when we arrived at the concert hall. The show was sold-out & we saw a colleague of C's who said someone had tried to buy her tickets! We were struck by the diversity of the people there. We saw people from church, school, patients & colleagues of C's; there were families, music students, older people... a rainbow of faces & hair (literally :). We found our seats, in the middle of the hall with a great view of the stage, & were so busy chatting that I barely glanced at the programme. The group was called "Huun Huur Tu" (http://www.huunhuurtu.com/) & the four men took the stage wearing the most gorgeous silk over-robes. Then they sat down... and sang. It was transporting. The vibrations of the tones they sang vibrated inside my gut & sternum & made me literally a part of the music. It was unearthly. The four of them sang full-volume, taking turns producing the amazing high, flute-like harmonics that float above the low, guttaral tones. It was tuneful, but very different, like a chant put to music. That was just the first piece... Over the 1 1/2 hours of the performance I got a deep sense of the Tuvan people- what they value (horses, nature), where they came from (originally China), & how far they had come to share their music with us- just from the music, since the performer who announced the songs had a heavy accent that was difficult to understand. Every man on that stage was a virtuoso. The percussionist was not just keeping the rhythm- he was an integral part of the sound-pictures thay painted, from the clopping of horses to low rumblings that seemed to float under the songs. They had amazing bowed instruments that made an incredible range of sounds. One of the performers played a long flute and sang at the same time. C & Paula & I just kept looking at each other in amazement. I felt like a child in the best way possible- open & awed by newness. It wasn't until the second set that I noticed that many of their instruments had horses heads carved as finials. I kept waiting for one of them to break a sweat or take a drink of water, the sounds they were making were so intense, but they serenely performed for us & made it look effortless. The second set was crowned by a piece they described as "Spiritual Home". They created a place populated by birds & insects & even an Elk bugling, & I was literally not in the theatre for most of this piece, carried away to Tuva. After they were finished, we brought them back for 2 encores & then had mercy & let them go, reluctantly. They were clearly moved by our enthusiasm & appreciation. All the way home I kept thinking how lucky I was to be alive & to have witnessed/experienced this music. It was so big & so beautiful that it made me feel that what I live with day-to-day, raising an autistic child, dealing with the joys & frustrations of life, was part of the beauty that they had created. I thanked C for getting us out on a cold, Tuesday evening, after such a wacky day, for this jewel of an experience. May the memory give me the deeper strength & patience I need so often; may my well be well topped-off by this gift from Tuva...

Monday, January 23, 2006

A look at labels...

Recently I discovered the blog by "shinyrobot" (http://partprocessing.blogspot.com/), who is a young adult with Aspergers Syndrome. I have been not only illuminated by their writing, but have found it very enjoyable as well. In a recent post, shinyrobot discusses their feelings about being labeled "autistic" (take a look- it's really cool!), & this got me thinking about the whole label thing, too.

In our state, a child receiving special education services has a "triennial review" (every 3 years :) where they undego complete restesting to assess their progress & also their current needs. B had his first "tri" this past fall (although he's been in the system for 4 years, they date it from the most recent diagnosis or change in diagnosis), which meant our first comprehensive look at his developmental development since kindergarten. B did not have much difficulty with the process at all- he tends to turn on the charm with any new adult he meets & since the contact was short-term, the honeymoon never ended :) His current OT & Speech Therapist were able to arrange to do those areas of testing themselves, which also minimised any possible discomfort for him. I was more unsettled by the process because I had a few weeks of various people, from social workers to psychologists to school nurses, calling me to update his records. I was a bit startled to be asked about B's prenatal history & early development by one of them, since not only had I assumed that this info was recorded last time they asked (& hadn't changed- duh!), but I am having a harder time recollecting all these things accurately as time passes (good time for me to get it all in a blog, huh?). I was most taken aback by my first conversation with the psychologis who would be doing all of the psych & academic testing with B. Nearly the first thing she asked me was whether or not we really wanted B to be labeled as having Asperger's Syndrome. (It did not lend me confidence that she pronounced "Aspergers" as though there were a "j" in the middle...). I explained to her that, although B has collected 2 more significant diagnoses (OCD & Tourettes) since he was diagnosed with Aspergers, his dad & I feel that this is the term that best describes B's functioning, particularly as OCD & Tourettes can be a part of the austism Spectrum anyway, & so we are content with it (she gracefully accepted that). More than content, really, because this "label" has given us an important framework within which to live & organise our lives. It has given us a name, so that we can do research to learn what we can do to help. It gives B membership to a group of others who have similarities to him. Legally, it entitles him to speech therapy so that he can learn pragmatic speech to help him socialise more effectively (a kid with his high scores on speech assessments would not otherwise be eligible for assistance, even if they really needed it). Ultimately, isn't that what labels for? They are supposed to be useful & helpful ways to organise & interact with the world. OK, I'm not naive... I know that labels can do great harm as well, & there are some labels that never should have seen the light of day. I am aware of the great fear of labels that the parents of school children live with. A good friend of mine successfully fought her daughter's being labelled ADD when she was in grade school- although, looking at her school career, I'm not sure if it really helped her daughter to do so. The great fear of labels is that they will brand a child as being different, difficult, & perhaps prevent them from progressing both academically & socially. I strongly suspect that the culture of individual communities & school systems are what truly determine how helpful a label is going to be. B is in a private school & receiving services from our city school district, so even though his school is using the labellling appropriately- to help children get what they need to learn, the culture of the school district is probably not so accepting.

For a while, C was receiving a glossy magazine called "Spectrum" at his office (he still has no idea how or why...). This magazine always featured a popular actor on the cover & was dedicated to publicising the needs & perspectives of parents with children on the autism Spectrum. I was always interested to note that, at least in the few issues we got, the popular figure on the cover did not have a family member or friend with autism, but was "interested" in helping the cause. Behind the gloss, though, I couldn't help but wonder what the cause really was... there were uncomfortably numerous references to discovering a "cure" for autism, & the ads for cruises to support the cause rather confused me. Now- I know only what my life with an autistic child is like. I suspect that if B had Kanners Syndrome, I might be looking desperately for a cure, too. But the articles in the mag did not seem to be about family's facing Kanners, they were upbeat stories about how their kids were still competing in sports, etc, etc. What finally put my tolerance over the edge was the mother who proudly (it seemed to me) declared that she had not shared her son's ASD diagnosis with him, so he would not be hampered by the label... !

When B was little, one of the child-rearing books we read explained the importance of helping children to name their feelings. So, when he was frustrated or angry, we'd say, "You look frustrated & angry." As he got older, it became, "Are you frustrated or angry?" In first grade, B's speech therapist did one session a month with his whole class, discussing & naming feelings (this gave me a comforting glow- knowing that other kids were benefitting from B's special needs :). The output from some of these sessions still hang on B's closet doors- two large thermometers labelled with positive & negative feelings, starting with calm/neutral at the bottom and working up in intensity. We use a similar system these days to help B label & cope with OCD thoughts, & thanks to the groundwork already laid-down it's a very useful system. Thanks to all of this work, B is known for having good & accurate insights into his own feelings & we feel confident that this is helping him in his learning of appropriate social behaviours as well. It seemed to me that sharing B's diagnoses with him, in an appropriate manner, are a continuation of this learning. Appropriate, meaning using language he can understand, building on knowledge he already has (or giving it to him in pieces so he gains the knowledge he needs), & using positive language to describe what's going with him. We went to Paula for a list of all the good things about having Aspergers & these have sustained B as he has struggled with the less positive aspects. When B developed Obsessive-Compulsive Disorder (OCD) nearly 2 years ago, & once the dust had settled a bit, we worked with his psychologist to discover ways for him to understand the OCD & talk about it. This is a continuing process, of course, but essential since self-talk is part of overcoming OCD. The Tourettes became a big player last summer, so C & I researched it not only from the perspective of our own comprehension, but so that we could help B understand what was happening to him when he had tics. We started by naming the tics, & when he seemed ready for more info, explained Tourettes to him. I can always tell when B has internalised & accepted these parts of himself because his play characters, whether bionicles or imaginary, develop these "disorders" (his word) as well, which happened within a week of the Tourette's explanation :). The outcome of this process has been impressive (yeah, I'm his mom, but I can still be impressed). We, of course, brought his teachers up to date before the school year began & planned strategies for classroom coping. Because the Tourettes is so noticeable, we began to gently encourage him to share this info with his classmates, either by allowing an expert to come in & talk to his class (not necessarily specifically about B) or to share it himself. He brushed it off at first. Although his class is wonderfully tolerant of human differences, some of the kids did question his behaviour, asking if he was doing it so he could leave the room, & some mimicked him. He was pretty indignant, so I reminded him that he could do something about it- he could educate his classmates & then they would know. I understood that the whole thing felt embarrassing to him & he just wished he didn't have to deal with it, but I also understood that this was something I couldn't really do for him. I believed he was old & mature enough to talk about himself, & not have me talk about him. This situation simmered under the surface with occasional ripples until late October when the school district decided to let B try an AlphaSmart portable mini-keyboard for his school work. Because B has to leave the room when the OCD or tics get overwhelming, his teachers had requested this device so that he could, essentially, do his schoolwork anywhere. It has worked beyond everyone's wildest dreams (& B has finally learned to touch-type -hooray!), but it had an unexpected side-effect. B felt he needed to explain to his classmates why he had the AlphaSmart. He made a tentative start, explaining Adpergers to some of the kids who were getting assistance in the special ed. resource room the day Alpha arrived, & who were there while he was learning to use it (ok- yes, he was preaching to the choir :). He was heartened by their response & asked his teachers for time at the end of the day to talk to both of the 3rd/4th grade classes. He asked me to come early so I could be with him. We sat in 2 small chairs while the kids sat at our feet (about 22 kids) & waited attentively for B to talk. And he did. I only bridged a couple of gaps when he didn't seem to have the words he needed. He told them about Aspergers, OCD, & Tourettes, entertained questions & comments, & received spontaneous applause at the end. He glowed. We adults in the room were definitely teary by the end- it was something to witness, my kid advocating for himself & speaking so knowledgeably & articulately about his differences.

The growing hasn't stopped, of course. We continue to explore the person that is B, within the framework of Aspergers, OCD, & Tourettes. What I have noticed lately is that he notices others around him who look & behave differently & then wants to understand them, too. He has become quite adept in spotting others with Aspergers :) I found him explaining Aspergers to the kids next door while playing in the snow a couple weeks ago... his dad & I reminded him gently that he needs to be sure that he only explains to people whom he knows will keep this information confidential, but I think that the embarassment factor is still real to him & he'll use good instincts. We're still here to help, should things go awry... but how nice to see him already on the road to self awareness!! It seems to have mirrored my own process of developing a sense of comfort with having an autistic child. I've been "out" for a few months now- that's my wrist in the picture above, & I wear the writstband every day. How can I be other than proud to be B's mother, & by extension, the mother of an autistic child?

Friday, January 20, 2006

May the Force be with me...

First, my complaint: why do my best ideas always arrive while I'm either driving the car or in the shower? The two places I'm least likely to be able to write down what I'm thinking... **grumble**

I was cruising out to the 'burbs today after my sanity time at school. B had a mildly tough morning, but has recently become very good at articulating what he needs from us to accomplish what he needs to do, so instead of hovering & wondering why he's melting down, we can put together a plan of action & move forward. Today is was OCD "thoughts" that were preventing him from getting dressed. I asked if he wanted me to stay with him while he dressed, since our presence often holds back the thoughts, & he said yes, so (with my back turned) I played with the talking Rufuses (they have identical sound chips, so we get them going in stereo & it sounds hysterical, which always cheers B up) while he dressed & we were back on track pretty quickly. His OCD/Tourettes tics have been on the rise lately, but we have a pretty good idea of where the stress is coming from that triggers them, which makes it easier for all of us. So, after sanity time with Paula & friends, I headed for JoAnn's to get a bigger piece of foam for needle felting & then to the oriental food store for more furikake & ochawan, plus any new sweets that looked interesting. On the way there, listening to Welsh folk music & enjoying unseasonably warm weather, I found myself contemplating faith... for the life of me, I cannot recapture the sequence of thoughts that brought me there, but there I was.

I have come to view most religious belief systems as constructs that allow people to have faith. I have been searching, religion-wise, since I was about 13 years old, which is when my family decided to stop going to church. We were Catholic, but had never really felt a part of the church community that we belonged to, so it was pretty easy to just drop it. I had never really "bought" the message of salvation or the need for it, so leaving the Catholic church felt like a door opening for me. I spent the next few years experiencing zen buddhism, kundalini yoga, & spiritualism & finally, at the age of 19, found myself at the Unitarian Universalist church I still belong to today. The great thing about being a UU, for me, is that the spiritual quest did not end when I joined the church. In many ways I have come to see my religious search as somewhat separate from church. Church is my community, the place bigger than my family yet not so big that I get lost & can't make meaningful connexions. It's a complex community & has changed considerably in the nearly 30 years I've been there. I've nearly left in disgust a couple of times, but this is where I honed my sense of what it means to belong to a community, & where I discovered my power to change it. My church family has seen me move through many stages of religious belief, from my post-Catholic phase (where I shook loose a lot of the beliefs I'd been raised with) to my discovery of the Goddess (where I found myself finally able to bond with & find wisdom from a person deity), to where I am now...

...which brings me back to faith. I have begun to see faith beyond the religious context & as more of a pure, psychological necessity for living. In this way, I have come to see myself as a person of faith. I think that people need faith in order to live their lives without despair, & in order to live life with zest. Faith to me is not sureness, as most religions would have you believe. Faith is living as if I am sure, but with an awareness that things happen, sometimes bad things, that I do not deserve, but that often teach me how to be a better person. Because I am a Survivor of incest, my trust of people was broken at a very early age. I felt this brokenness for many years & am only just understanding that I don't feel broken any more. My husband has played a big part in my transformation, & my son has, too, as has my slow-but-sure development of a functional relationship with my mother. When I look around me now, I see people whom I can depend on. I do still have fears, of course, & I can think of situations that would perhaps destroy me ( I worry terribly sometimes that something will happen to B or C- I simply cannot imagine the emptiness of their absence). So I've come to think of my faith as a faith in life, the life described in the Star Wars films as the Force. The cumulative, concentrated will of Life to Live is how I see the Force & what I currently place my faith in. I still get great comfort from my relationship with the goddess, which is an important part of my mindfulness practise. I also am comforted by my image of being a Jedi, in relationship with the Force, feeling it, & working with it to make life go well. I don't have the authority or hierarchichal Jedi hang-ups that the movies portray. My Jedi would never have fought the Clone Wars or have been sucked into being ambassadors for the Old Republic, they would not have taken sides in any conflict, but would have protected those who need protecting & mediated for the the rest. (They wouldn't have worn those clunky boots, either... :) My Jedi would not have been represented by their lightsabres, but by their aura of calm. These are the things I aspire to, "aspire" being the key word. I do not beat myself up (much) when I fail. B is far too sensitive & impressionable for me to luxuriate in failure, since this is not the sort of behaviour I want to model for him. He's seen me melt down- & he's also seen me apologise for it- apologising has become practically a spiritual practise for me. But that's the other thing about faith as opposed to religion (as is often practised)... I know I have to exercise my faith every day in order for it to "work". Not to perfection, but too keep me on the path of learning & growing into my life- which is not all about me, but about the Life that surrounds me, my family, my communities, & ultimately the world. So I aspire to be the best Jedi I can be, which means trying to find the wisdom to think about what I'm doing, not take things for granted, not to judge myself & others harshly, & to honour life. I guess this qualifies as my evolving Jedi Code :) May the Force be with me as I practise...

Thursday, January 19, 2006

History pt. 4- the dominoes begin to fall

B began his second year of preschool when he was just about 4 1/2 years old. He went 3 mornings per week & there were about 22 kids in his class with 2 teachers. Both teachers had been Headstart teachers & were wonderfully personable. B seemed happier there than anywhere else but home & church, so we ticked along in our weekly routine. At this point in his development, B had reached 95th percentile for height, but was not quite 30th for weight (he weighed about 36 lbs. when he began preschool) & I was having to make sure to adjust the elastic on the pants I made for him so he wouldn't crawl out of them. I started making little boxer shorts for him when he potty-trained, just past his 4th birthday, which he preferred to briefs. They were very good face-savers when his pants did slip, because they looked like shorts, really, & I used the brightest, coolest fabrics I could find to make them, so they were fun, too. We had discovered over the summer that B was mildly lactose intolerant, which cleared-up the tummy gas pain he'd had since infancy. It was nice for me that B didn't need a lunch for preschool because he didn't like sandwiches & other easy to pack food. He preferred things like lunchmeat rolls with mustard down the middle & hard-boiled eggs. He disliked really messy foods like pudding & had difficulty putting utensils in his mouth- he'd turn them oddly & seemed not to want them to touch his lips. He used a napkin throughout his meals, wiping his lips rather than licking them. B seemed kind of spacey & didn't always respond when we called him. He still did not enjoy drawing or colouring, but adored playing with his Thomas engines & track. I loved them too :) I would make elabourate lay-outs in his room which he'd play with for hours (as long as I was nearby). We had begun using incentive charting with him the year before to help him give up the binky. He earned James the Red Engine (one of the obnoxious ones which I was less excited about B having...) when he had gone to sleep without bink 10 times. We also used Thomases as rewards for potty-training. I would cut out pictures of the engine being earned & put it at the end of the row of boxes that indicated successful use of the potty, with stickers to check them off. It was a very successful system that we still use today.

The beginning of the journey of discovery that led to B's diagnosis of Asperger's Syndrome began, oddly enough, with sleep apnea. I can't remember exactly when it began, but I do remember laying in bed & listening to the interruptions in his heavy snores (his room is right next to ours), counting the seconds. We'd taken him to the pediatrician to investigate the snoring & he said B's adenoids were enlarged a bit & there was fluid in his ears. He sent us home with Rhinocort nasal spray... which we never successfully got up B's nose. He hated the sensation &, since we have used it successfully as he's gotten older, I suspect that he was just too young for it. By October B's apnea had gotten to 20 seconds long- it was horrible. We had been back to the pediatrician with no success. Finally, C just called him & asked who he'd send his kids to if they needed an Ear-Nose-Throat doctor. Our pediatrician got the clue & referred us to Dr. W. It was November before we got an appointment, & when we went, it turned out that B's adenoids were considerably enlarged & there was so much fluid in his ears that he had a 50% hearing loss, thankfully thought to be temporary. B never complained of pressure in his ears. At the time I thought it was due to his having a very high pain tolerance, since we'd had incidents with B being clinically ill (usually found at regular medical appointments) & never telling us that his throat or ears hurt. This made us feel like really good parents, believe me. On Dr. W's advice we scheduled B to have his adenoids & tonsils removed, plus PE tubes placed in his ears, in early February. We made sure that his teachers were aware of his hearing loss & we kept a close eye on him in public, for safety's sake. In January it became clear that B was no longer really participating at school & spent a good deal of time just laying on comfy pillows. His teachers said they didn't mind this, but thought it would still be good for him to be with the other kids, so we kept him at school. B was weighed during a pre-op visit & I saw that he still weighed 36 lbs- the same as he had in August. It really hit me that he was not thriving, & how much he needed this surgery, even though it was scary for me. We also learned that this time that B had a 70% hearing loss. His surgery was scheduled on my 43rd birthday & it was an outpatient procedure. We got there at 6:00 am, then did all of the hurry-up-and-wait stuff, then the waiting. When Dr. W came out to see us afterward, he told us that things had gone well, although he had a terrible time getting B's tonsils out because chronic tonsillitis had welded them to his throat- we never ever knew that he'd had tonsillitis (another blow to the parent self-esteem). After a few hours recovering, we took B home around 3:00 pm & he immediately asked for a hard-boiled egg with salt (!). He also complained that the fridge was too loud :) We were worried about pain & he wouldn't take the codeine syrup they gave us, so we tried hiding it in various foods- perhaps the reason he won't eat jello to this day. The worst part of the next few days' recovery was the constipation caused by the codeine (sigh).

B went back to school the next week & he certainly seemed a changed boy. He responded when you spoke to him, for one thing! By his 5-year check-up (in April) he was up to 50th percentile for weight. I really enjoyed the change & his teachers did too, since he seemed to pick-up where he'd left off at school & was participating again (as much as he ever did :). However, at the end of May his teachers asked me to come in & meet with them about B. Both teachers were trained in child development & they had been watching him closely. Although he had made great strides since his surgery, he was not catching up in his development as quickly as he should have been, so they asked us to have B's fine-motor co-ordination tested by an Occupational Therapist. I trusted their judgement & got a referral from B's pediatrician. Some backstory is in order here: one of my main interests as a teenager & into my 20's was working with disabled children. I volunteered for many years at the local United Cerebral Palsy centre, working at their summer camp & in the Physical Therapy unit of a local elementary school during the school year as part of my school programme. My senior project in high school (I went to an alternative school, so this was a requirement for graduation) was a case study of a child I knew who had Spina Bifida. So I wasn't really intimidated by the request to take B for testing because I understood what the OT was doing & had the language to understand what she was telling me. I understood, but after the first few sentences I felt myself go into shut-down mode. I worked very hard to keep my ears open, even though my heart was going bye-bye... she told me that B (at 5 years, 2 months old) was functioning at the fine motor level of a 2 1/2 year-old & should be seen by a Physical Therapist as well. She referred me to a PT in their group & I made the appointment on a Wednesday so C could come too. (side note: I just had to take a break typing because I started crying remembering all of this. I can't remember if I cried when it was happening- all I remember was it happening so fast...) C's first comment after the PT appointment was that it's not a good thing when a PT tells you your kid's running gait is "interesting". The dominoes were really falling now... the PT's report was that B's gross motor development was severly delayed & that he was hypotonic, meaning that he had (& has) low muscle tone. This can be an indicator of many things, including Cerebral Palsy, which was rather chilling. As B was entering kindergarten in the fall, the PT strongly recommended that we apply for services through our school disctict. C remembered a patient of his who works for the special ed. department in our district, so he called her the same day & she explained what we had to do. First, we had to get a school ID number from our neighbourhood school, which turned out to be our first stumbling block, since it was summertime & the secretary there told him to come back in September (which turns out to be illegal in our state, since they aren't allowed to deny a request like this, but what the heck...). C was persistent, got the number, & we made an official request for testing. This meant running all over the city that summer because that's how they do things when school's out. The people we saw, from OT's, psychologists, to social workers, were uniformly kind & skilled. The OT who tested B took me aside to tell me that she strongly suspected that B had visual/motor involvement, but that it was such a new field the city did not like OT's to address it in the testing. She gave me a name to contact if I wanted to follow-up. (Duh!) We had taken B to an Opthamalogist as part of the recommended work-up (a truly horrific experience, since I had to hold B down for the eye drops part of the exam) & nothing out of the ordinary was found. Dr. C, who was the visual/motor specialist, found that B did not have binocular convergence, nor did he track objects visually the way he should be. We started therapy with Dr. C the next week & went weekly for the next 1 1/2 years (paying out of pocket because the city didn't cover such services & neither did our insurance) untill B finally achieved normal convergence & tracking.

B's first CSE (Committee on Special Education) was held in September, just after kindergarten started. We had decided to keep B at the same place he'd gone to preschool, which was private & had a state-certified kindergarten, since the teachers had been so supportive during our "voyage of discovery" that summer. One of his preschool teachers moved up to kindergarten level, which was perfect from our point of view. She came to B's CSE & was a great resource for them, since she was one of those who had requested testing in the first place. At the CSE, B was awarded OT & PT services, with a designation of "Orthopedically Impaired". The next hurdle was deciding where B would receive those services, since he wasn't at a public school. The possibility of busing him 3 times a week to another school was batted around (groan!) but sanity prevailed when the head of the district's physical services decided that it wouldn't be in B's best interest to do that. I still send good vibes to that wonderful woman!! Later, the principal of B's school told me that we were the first city district family ever to get on-site services for their child. B's PT & OT providers were great. They met with us & decided that 1 of their weekly sessions (for each of them) would be provided at our house so that we could stay in close contact & learn strategies to use at home. B had never established a hand preference, so we all decided (left-handed me with a pang-) to encourage him to use his right hand. Although I had done most of the running around with B over the summer, C was an interal part of this whole process. Our home OT session was on Wednesdays, so C could learn right along with me. At the same time, B was in school full days now, so there was a lot of adjustment for all of us. Sept. 11, 2001 occurred during the second week of school, & although it has a terrible infamy to many, it also marks the day that I locked my keys in the car while dropping B off at school & had to walk to C's office to get his keys (not terribly far, luckily, but adding another note of surreality to the day). We were off & running onto a very different life-path than we had expected, having started the year with a temporarily deaf child & ended-up with a developmentally disabled one, but B was responding well & we knew it was the right path.

Wednesday, January 18, 2006

Spinning Update...

Well, we did it! I mentioned in my "Spinning a Yarn" post that B & I were attempting to make a skein of yarn together (to be put to nefarious uses... heh, heh). We finished filling the bobbin on Monday & B's drafting really has improved, although I think he now likes to make big blubs in the yarn because I named them "rabbits" (sigh). After sitting on the ball-winder overnight the yarn was "tame" enough to ply yesterday after school. The process resembled what I imagine the Pushmi-Pullyu from Dr. Doolittle would look like if it tried to ply yarn on a spinning wheel... to ply from a centre-pull ball of yarn, you tie the ends together, tie them to the bobbin-leader, then treadle the wheel in the opposite direction from the way you spun the singles, pulling out the yarn from the middle of the ball & the outside, let these 2 strands twist together, & run them onto the bobbin. Oh, I also count my treadles, after testing a bit to see how many make the yarn well-twisted yet pleasing, to make each length that I pull from the ball evenly plied. Okay, now imagine the two of us, not linked telepathically or anything (very much...), co-ordinating this process. B manned the treadle & I was responsible for the wool/bobbin interface. Our first mistake was my forgetting to tell him to treadle in the opposite direction... once that mess was discovered & sorted-out, we had to test & count treadles, which meant a lot of starting & stopping. After nearly knocking the wheel over by stopping it too abrubtly, we discussed methods for gradually slowing it down (using proper terms like friction & decceleration of course :). We finally found the proper rhythm & could actually chat while plying, although my brain's hemispheres felt a bit stretched by this. B told me that his class is playing a version of the popular computer game "Oregon Trail" in Social Studies, only not on the computer, & the kids have all been divided up into teams who are provisioning themselves to take a covered-wagon journey. I asked him if his team had brought a spinning wheel & he began to giggle, saying that they had, but at first they had thought it was a wagon wheel!

We finally got to the very end of the ball & B got a kick out of seeing it just disappear into a final strand of yarn, then be sucked into the orifice of the wheel & onto the bobbin. I got out the niddy-noddy, which is the tool at the top of the picture & wound the plied yarn onto it while we counted the turns so we could calculate the yardage, which turned out to be 75 yards! I tied the skein in a few places to prevent tangling & then B wanted to hold the niddy with the yarn on it. He swung it around & declared that it would make a fine Bionicle tool... :) We slipped the skein off the niddy & weighed it (55 grams), then I ran a basin of hot hot water for washing. B used the end of our sink-brush to stomp the yarn into the hot, soapy water (I commended his enthusiasm, but stopped him before he felted the skein...) & then we went off to watch a movie. Later, I showed him the cooled-down wash water ("gross!") & we ran the rinse water. After being spun-out in the washer & hanging to dry overnight, the skein is soft & sweet-smelling (lavendar dish soap) & ready for nefarious purposes...

At dinner, B told his dad all about plying the yarn saying loudly, "I just don't know what we'll be doing with all this yarn, though." with a not-so-subtle wink to me. He did this a couple more times until C just cracked up & called him "Mr. Subtle". "What?" says B,"I like winking...". Hee, hee... y'see we are planning to use the yarn to make dad's birthday present (it's in early February). And we're half-way there!!

Tuesday, January 17, 2006

History pt. 3

Although I left "History pt. 2" off with B starting preschool, I've been thinking about pieces of the story that I'd left out & that need to be told...

Something that we heard a lot from family & friends when B was very young was that things would get easier as he got older, especially after he learned to talk. B learned to talk right on time, developmentally, & was speaking clearly & eloquently at an early age... but things did not get better. He seemed to have 2-3 week phases where he was impossible, then just when I was at my wits' end, things would calm down a bit, but he always moved back into challenging phase after a couple weeks of calm. He never was a "terrible two", but moved in & out of his "phases" like ocean waves. There were times when he was almost oblivious to anything but what was going on in his head, & he is only now -at age 9- being able to articulate some of what's going on in there. He became overstimulated very quickly & I had to be extraordinarily sensitive to his mood in order to prevent melt-downs. Needless to say I was not as successful as I hoped to be at keeping him on an even keel. It was a great burden to have him so dependant on me while everyone was telling me that it was supposed to be getting better. If it had been only me raising this kid I'm sure I wouldn't have survived it. Fortunately, C was not only supportive, but reliable. As a physician, he works 12-hour days, but unlike many physicians, he doesn't work on his day off during the week (although he worked 2 Saturdays a month when B was little, less often now) so I could depend on C being home in the middle of the week & ready to take over & give me breathing space. I remember times when I just held on till Wednesday & cursed Saturday! I was pretty militant about my free time, too, but I realise now that it was this B-free time that allowed me to recharge so I could survive the rest of the time with him, so I understand why I took that attitude. The problem then was that one of us was always with B & the other doing something else, so we had little time together to reconnect as a couple. After I re-entered therapy (more on that in a bit) we were encouraged by my therapist to find a sitter & go out at least twice a month, & thankfully we were able to find a few lovely young people who could/would stay with our challenging kid, although most of them couldn't put him to bed. It did the trick, though, & we still do our best to set-aside time for us as B gets older & his needs change. I tend to get lost in the day-to-day living of life & am lucky that C is much better at finding fun things for us to do & for arranging sitters. He looks ahead much better than I do, too, & is the main reason we ever get organised enough to take vacations!

One of the places B & I would visit quite often when he was little was the local children's museum. It had a baby area for crawling around & way-cool, hands-on activities for kids as they got older. The museum had rescued an old diner & got it back in running order, so it was a lovely day out for both of us with play time in the morning & then lunch before we went home. I enjoyed getting out & at least seeing other adults, too. When B was around 2 1/2 or 3 he began having terrible difficulty when we would leave the museum. He'd start to scream when we were leaving & literally scream the whole way home. The first time he did this he ran in circles in the living room until he collapsed, after we got home. This shocked me so badly that I felt my emotions shutting down, something that hadn't happened since I was in Survivor recovery. I remember holding him after he collapsed & feeling absolutely nothing. After he fell asleep for his nap, I called my former (I thought) therapist & made an appointment for the following Wednesday... I also stopped taking him to the museum when it kept happening, & after he melted down in a toy store, stopped going there, too. I found that I had to rigidly plan any trips out of the house to accomodate his tolerance levels. Luckily I rarely took him grocery shopping since I could do that on blessed Wednesdays. Now I could only make 2 or 3 short stops when we went out or life would become hellish. Sometimes I could tack-on a stop by daddy's office to cheer us both up (& show everyone there how he was growing up), which also gave me some adult human contact- I found it where I could! Church was our major social outlet, with the added bonus that B was in the nursery during the service & we only had to help-out in there every few weeks. Both C & I have sung in the choir for years, as we both find music & music performance uplifting & restorative (we'd put B in the baby sling & perform with him when he was an infant :), & it was extremely helpful to our mental health to be able to continue this. Church was also a time for C & I to be able to be together without B sucking the energy out of us, for a little while at least, & a place where many people had known us before B & could remember who we were before we became parents. Finding times & ways to communicate was not easy, & my therapist's recommendation to find a sitter & go out was an important step in reclaiming our "couple-ness". It also helped us to get in the habit of communicating clearly about B to each other. A few weeks after I had stopped taking B to the children's museum, C mentioned that he thought he'd take him the next Wednesday... I looked askance at him & asked if he knew what he was getting himself into... he seemed confident that all would be well. I had a nice quiet morning & lunch... then C carried the screaming child into the house with a plaintive "I didn't realise that when you said he screamed all the way home, you meant all the way home...!" It was a bonding moment for us. Since I was the home-front person, C didn't always experience the extreme ranges of B's behaviours. It was really helpful & although we have different perspectives & approaches to coping with B (usually a good thing), I rarely feel like C doesn't empathise with or appreciate what I experience with B.

Monday, January 16, 2006

A "Quick Minute"

After putting B to bed this evening, C was on his way downstairs when a little voice came floating down... "Dad, can I have a quick minute?" Since they had been playing a board game for an hour before bedtime, I volunteered to go up so C could make lunches for work & school tomorrow. A "quick minute" is the term B uses to ask us to come & just lay in bed with him for a bit, after lights out. It took a while to shovel aside the herd of stuffies surrounding his pillow (I finally used Pikachu as a pillow :) & get comfy, then to the business of helping him to calm down & prepare himself for sleep. I usually ask him to relax & not wave any of the stuffies around. Them after a bit of chatting, remind him that it's time to be quiet & try to rest... that usually does it & these days it's no more than 5 minutes before he's ready for me to leave.

I couldn't help but be reminded of the evolution of this night-time ritual, which he (blessedly) needs less & less as time goes by. I mentioned in "History pt. 1" that B was considered a "high needs" baby, & from our reading on the subject we got the idea that this indicated that his neurological system was still too immature for him to soothe himself at all, so he was taking his cues from us (our bodies, really). His infancy was essentially a "quick 5 months", since it took him that long to feel secure sleeping without us right next to him. The next stage was where we had to rock him to sleep every time he woke in the night- this lasted until he was 2 1/2 & C & I coped by taking shifts, so at least one of us was off the hook when B woke up. It could take anywhere from 15 to 45 minutes to get him back to sleep & deciding just when he was asleep enough to put back in the crib without re-awakening was a delicate process. The next stage was being in the room until he fell asleep, but not actually holding him. My main memories of this were from the occasions that he'd wake in the night (not every night, but enough to remark upon- & remember). We had moved his crib into the room that had the "big bed" but he wasn't sleeping in the "big bed" yet, so I would lay down on it, next to the crib, & try not to fall asleep myself so I could go back to my own bed, clock, husband when B was asleep. Again, deciding when he was asleep enough for me to creep out of the room was not easy to do, made even more exciting by the squeaky floorboards of our 1920's-era house. Eventually it all evolved into a "quick minute" laying next to him on the bed- early on we'd wait until he was asleep, but as he got older we'd use music or story-tapes to help him to sleep, instead of our presence. He still wakes in the wee hours of the morning fairly regularly & if we'd let him he'd happily put on the light & play until it was time to get dressed for school. If he calls for us, then we go in & try to get him back to sleep, but sometimes he just hums or puts in a tape on his own, or talks to his stuffies quietly. It has been heartening to see the progress he's made toward soothing himself... lately we've been talking about life-skills (he & I) like learning patience & learning to think before speaking. I think that falling asleep on ones own is definitely a good life skill to have! Having the words to ask for what one needs is also a very good life skill, & I find the "quick minutes" these days to be much more enjoyable than in the days when they were constant & there was no light at the end of the tunnel. This evening when I reminded him to relax, I couldn't help but be reminded of the baby who couldn't sleep unless someone was holding him. It's comforting to feel that just my presence can hold him as closely as my arms used to, especially since he's gotten too big to sit on my lap any more & has to settle with dad's- & frequently still does :).

Sunday, January 15, 2006

Needle Felting & Japanese

First of all, thanks for checking out the blog, newc! Yes, once B figured out which direction to read it, he really enjoyed "Hikaru no Go". We are planning an excursion tomorrow (he's off school for MLK Day) back to the anime shop so we can get volume 2, then it's off to lunch at our favourite Japanese restaurant. Thanks for asking!!

The picture at top is of my latest semi-obsessive way to pass the time, needle felting. What you do is take some wool roving (roving is fibre that has been washed & prepared for spinning, usually by a machine of some sort), of which I have rather a lot, make a big puffy pad of it on the foam block (upper right hand corner), then start poking it repeatedly with special needles which cause the wool to felt into a cohesive pad. I have been embellishing mostly with handspun single-ply yarn that I dyed with easter-egg dyes (those are the spirals & squiggles on some of the pads). I put some un-felted roving in the picture along with a little skein of the handspun so you can see the raw materials. It's kind of like magic, really. The jabbing of the needle, although tiring after a bit, is really cathartic & you end up with something pretty & useful when you're done. B has gotten into it as well & I'll let him do it as long as I'm around, as the needles are very sharp! I use a long weavette needle instead of fingers to place or hold the wool because, once you've jabbed yourself with that needle, you really don't want to do it again!! I got the starter kit last Wednesday (I think- maybe Thursday) & you can see I've spent some time messing about with it. It's neat because I can have a conversation while doing it & I don't have to withdraw to another room, or count, or worry about distractions like with some of my other creative outlets. I'm going to look for a bigger piece of foam at JoAnn's, since this one is only 8"x4" & I'm ready to try something bigger. Some people make dolls & sculptures with needle-felted wool, but I tend toward the useful/practical & prefer to make things that can be used for something. My friend Nancy got me into wet felting (I use a washboard) a couple of years ago & I love doing it, but it's much more physical & my hands & back are sore for days when I wet-felt. So I'm back on the felting track & still having fun mucking about & seeing what I can do. Such fun!

Speaking of fun, we had a very enjoyable Japanese lesson yesterday. Often it's difficult to get B plugged-in for very long (I try to keep him engaged for at least 1/2 hour, but it's not always easy) but something worked yesterday & he stayed with us for nearly 2 hours! It may have helped to have started out with hot cocoa... I usually offer Tomoko green tea- especially when it's cold out, but it occurred to me that she might enjoy having something different, since she enjoys experiencing US customs & foods. I made Ghirardelli hot cocoa, with milk, & C joined us for some, too, & we all just chatted for a bit. We showed her the manga we'd bought (B began reading "Hikaru no Go" at this point, actually) & some other new things. I save some of the goofier (to me) packaging on the Japanese foods I buy so she can translate & explain them to me. There was a funny tab from a jar of furikake (rice seasoning) that had pictures of happy onigiri (usually triangular, filled rice cakes) with eyes & hands. She called them "onigiri kun" meaning "rice-cake boys" & then explained that kids have different designations depending on their age, with "kun" meaning "almost a young man". I love the glimpses of Japanese culture I get through these discussions. Our lesson proper was about the days of the week & she showed us the kanji associated with each day, which stand for things like "sun" & "fire" & other elements. The kanji for "month" means "moon", which makes sense to me! She had us look at a calendar she'd brought back to the US with her & then match up the symbols on the sheet she'd typed for us. This is one of the things that makes Tomoko such a good teacher, since these exercises appeal to the code-expert superspy part of B & also help me to remember the lesson better than just reading & reciting it. We also learned to tell time, which led us back to counting & remembering the numbers in Japanese. I keep a set of asian dice on the table where we work, I we were using them a s arefernce. B all of a sudden asked Tomoko what the Japanese word for "temple" is. He said that the kanji symbol for 6 (roku) looked like a temple to him & they discussed the elements of that kanji, which indeed did include "roof". He then made up a game using the dice & some mosaic blocks that we have, called it "Ni Jin-Ja" (meaning 2 temples) & then explained the rules. The three of us played it, referring to the numbers by their Japanese names, & it was great fun. Bless Tomoko for her flexibility (she seemd to enjoy the game & what she called B's "genius moment", too). After our lesson, B reimmersed himself in "Hikaru no Go" & finished it by dinner time. He also taught dad to play "Ni Jin-Ja" & they refined the rules. It was fun to discuss the story with B over dinner & I think a Go set is in our future- we both want to try the cool stone-placing moves we saw in the book! He also wanted to know what an "aura" is & why the ghostly male Go master in the book looks like a woman... never a dull moment around here :)

Friday, January 13, 2006

Holy Manga, Batman!

I think I'm in deep trouble... there was an article recently in our local alternative newspaper about Manga, aka Japanese comics (but oh, so much more!), & it mentioned a shop that opened last summer specialising in anime. It's right across the street from JoAnn Fabrics (did I mention that I'm in trouble?) so I stopped by after hitting the latest sale at JoAnn's, with the main intention of finding something appropriate for B (riiiight...). Why would I buy manga for my kid? Here's the logic: as I mentioned before, B had serious visual/perceptual difficulties that didn't begin to resolve until he was half-way through first grade. He didn't actually begin reading "chapter books" on his own until the summer before entering third grade & although he now is reading at nearly seventh grade level (he's in fourth grade), he still doesn't have the habit of reading under his belt. He's getting there (especially after he was tested last fall & we found out his reading level- no more Ms. Nice Mom, sort of), but I'd estimate that C & I still read half of every book he's reading out loud to him. This is not all bad- we get to discuss what he's reading & we can all share our ideas about it (plus check to make sure he's "getting" what he reads). So I have been looking around for ways to get him engrossed in books & finding books that will hook him into reading the whole book without help. We are in the habit of having books-on-tape (or cd) on hand for B to supplement his reading & C had the great idea of getting a Beverly Cleary "Henry Huggins" book-on-tape for him from the library. This has motivated him to read the other books, which he's enjoying very much. Sooo, I thought that he might get a kick out of the more in-depth (than US comix) stories of Manga, with the added cachet of having them be Japanese (he loves Japanese names & all of his recent Lego creations have Japanese names- see "Chibi" below). Although he initially paid much more attention to the pocket-sized Pikachu stuffie I couldn't resist getting for him (I am a sucker for sure...), he did take a look after dinner at the "Hikaru no Go" manga that was recommended for 9-year-olds by the helpful folks at the store (I also learned that the manga books are rated on the back- who knew?). I read "Hikaru" before I picked B up from school & loved it- it was hysterically funny in places, but also showed interesting glimpses of Japanese culture, & the illustrations weren't difficult to follow (once you got used to reading the book "backwards"). B requested that I bring the book up to his room when I went to kiss him goodnight, so maybe he'll read some tomorrow morning before breakfast.

Oh, & for me? Well, I really wanted to get Miyazaki's "Nausicaa" volume 2 (this title was recommended by our Japanese teacher, so I have vol. 1 already, & the dvd...) plus look into "Inu Yasha" which had been mentioned in the forums I help moderate. Did I mention that the anime store also had Japanese hard candy...? Did I mention that I am in trouble...? B's off school Monday & I'm trying to think of a reason for us to go back (maybe he'll be ready for "Hikaru no Go" volume 2...?). Help!

Thursday, January 12, 2006

Spinning a Yarn...

Ooooh! My first comment here in the blog!!! (waaay down at the bottom, after my first post) **sniffs lavender-soaked hanky** Ok, I think I've recovered... I have shared the blog address with a few friends to see if they think it's going well &, with their encouragement, I decided to join the ring mentioned in the sidebar, but have had very little other feedback on this site to date. Thanks very much, Anonymous!

Um, right, back to business... I have been a handspinner for nearly 13 years (it's easy to remember how long because I began learning on my 35th birthday). I own a measly (by some standards :) two spinning wheels & many, many handspindles. Since B was born handspindles have become my preferred way to produce yarn since they do not require sitting in one place for long periods of time (& I think it goes without saying how impractical this would be these days). Fortunately, I really like the yarn I can make on spindles, particularly the cotton thread. Every time I pick up a spindle & some cotton roving I get that much closer to fulfilling the promise I made to C a few years back that I would make curtain for the dining-room windows. Being me, I decided that I would spin the thread & then weave the curtains from the handspun... so it's taking a bit longer than he expected... but he's being very patient :)

Right before the holidays I did a demo of wheel-spinning at school & nearly filled a bobbin, so I decided to actually sit at home & fill the bobbin so I could ply it & have another finished skein of yarn (much more useful than unplied yarn sitting on a bobbin). I didn't realise it, but B noticed & his interest was piqued. When our friend Nancy came to visit while he was on school break & brought her new wheel to show us, he got sucked-in by machine envy & asked if he could try mine.

Info break: I was a very crafty kid- always making cards, drawing pictures, folding origami, you name it. I have always enjoyed sharing crafts with kids & expected to do so with my own... but even before we knew for sure that B had developmental delays, it was clear to me that he was not interested in using his hands to make things. Knowing that the best way to create an aversion to any activity is to push it hard, I just packaged up the part of me that wanted him to be crafty too & hid it away. I learned to be delighted when he chose to use more than one colour in a kindergarten-age drawing, & B's first multi-coloured, themed & self-titled drawing "The Prtecshuns of the Sorcer's Stone" (from Harry Potter, of course) is framed & hanging in my sewing (etc.) room. B's had 4 1/2 years of Occupational Therapy now & his fine-motor co-ordination is approaching normal for his age, although he still has major motor-planning issues that prevent him from learning things by rote very easily. After we began Japanese lessons I got back into origami, which I've been interested in since I was younger than B is now. I started doing simple folds with him this summer, mostly as distractions when we were waiting for our meals in restaurtants or in other waiting situations. We've made flapping & pecking birds, & I once hopped a frog right into a votive candle at a posh restaurant in Boston (accidentally!) & got it out again without setting it on fire- much to everyone's amazment (must be a Jedi thing... :). Little bit by little bit, I'm unpacking the part of me that I hid away, & really enjoying the moments that B is interested & focused enough to want to try something crafty & new.

So, he wanted to spin! I found some of the coarse-ish roving that I use for teaching & got the wheel set up with us sitting side by side on the sofa. I showed him how to treadle & let him just treadle for a while (not unlike using a stationary bike, really). Then I began drafting the wool & let him treadle, so he could see what I was doing & see the yarn build-up on the bobbin. Then I took over the treadling & coached him as he drafted- pinched with one hand & pulled the wool with the other to attenuate it, then slid the pinching hand toward the pulling one to allow the twist to run into the fibres & make yarn. It really isn't as easy as it looks, but he got the hang of it, but then soon tired of drafting & asked to just treadle again. Then we moved on to other things, with the bobbin still showing some of the wooden core under the spun yarn... meaning that there wasn't really enough to ply... meaning that that wheel was out of commission for anything else (changing bobbins is a bear on this wheel) unless we just unwound what we'd done or spun some more.

He wasn't terribly interested for the rest of school break, but I was finally able to impress on him that it would be a shame to waste what we'd already spun. Heck, if we filled the bobbin & plied it, he could weave a potholder for dad's birthday from the yarn (early handspun is usually potholder yarn, tending toward the bulky)- & how many kids could say they'd done that? So we've had a couple more sessions of spinning together, sitting together on the sofa with him treadling like mad for most of the time & a break in the middle where we switch & he practises drafting. He's getting better! Especially when I remind him not to strangle the roving & take the time to smooth-out the "rabbits" (the big blubs he makes look like out dear, deceased angora). The bobbin is half-way filled & I think we may actually accomplish what we set out to do, & dad may get a potholder by Feb. 6th. What was even more fun, though, was B narrating a "Mr Know-It-All" segment (complete with Bullwinkle voice) about spinning. He imagined Bullwinkle trying a drop-spindle first... & dropping it off a cliff. Then, he tried a wheel, where he got tangled-up in the works, & then attempted to ply his yarn with... pliers :) I was just cracking up & mentally thanking my husband, again, for getting me seasons 1 & 2 of Rocky & Bullwinkle last year as gifts. (The kid does a killer Boris and Natasha, too!)

About Me

This blog account is now shared by Lisa/Jedi & son Brendan, who has begun his own blog (see links). Lisa is 53, full-time mom (to afore-mentioned Brendan) & part-time fibre-artist. Brendan is 15, in the 9th grade, & is a 5th kyu aikidoka, enjoys swimming, rpg gaming (Adventure Quest etal :) & is becoming a heck of a D&D DM. We have been studying Japanese language since the summer of 2005 & both hope to become fluent japanese-speakers someday. Our family is rounded-out by Charlie (aka Dad), who is a very good sport about everything :) & loves to sail.